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    #107044 - 07/14/11 08:06 PM Re: His doc is shocked. [Re: JustAMom]
    MumOfThree Offline
    Member

    Registered: 04/07/11
    Posts: 1693
    Loc: Australia
    I think MON has covered everything I was going to say, including starting with the WOW. I do hope that having an explanation is of some relief to you, even if you would prefer your child be perfectly healthy it's got to be better knowing there is something going on.

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    #107047 - 07/14/11 08:46 PM Re: His doc is shocked. [Re: JustAMom]
    ginger234 Offline
    Member

    Registered: 04/03/10
    Posts: 94
    Loc: Florida
    Originally Posted By: JustAMom
    After ambulatory EEG testing, it was evident that he has complex partial seizures in his frontal lobe during his sleeping and waking phase.

    He may or may not have ADHD and his neuro thought he may have had this type of activity for a while and may be a lifelong condition. His neuro was a bit surprised as he thought while he the EEG would probably report normal activity because he was already on a maintenance dosage of keppra.

    I think the next step is to manage the seizures before they start to address attention issues.

    So his body is most likely not getting the restoration it needs if he is seizing while asleep. A layman's view, but I know how difficult it is to function when your body is not rested despite having slept. I hope the neuro will be able to find another med or adjust the dosage he is on to manage his seizures. I cannot begin to express the relief I felt when I at last began to get the rest I needed.

    Continued blessings to you & your son.
    _________________________
    When you're curious, you find lots of interesting things to do. Walt Disney

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    #107052 - 07/15/11 03:59 AM Re: His doc is shocked. [Re: JustAMom]
    chris1234 Offline
    Member

    Registered: 06/27/08
    Posts: 1897
    Justamom ---
    good for you and your son for continuing to look for the REAL answers, it's so easy to just give up on a kid who is having issues, especially when you think, hey they're an adult now! Very impressive MOM work.
    There is a woman at my work, her step son failed his last quarter of classes as a Sr., is in peril of loosing scholarships etc., because he has alcohol and likely depression issues -- the dad refuses to get him counseling or other treatment. The kid is just falling apart and the dad assumes he just needs to 'pull himself together'.
    Pretty off the track story, but the idea of sticking with your child is a big issue for me, not accepting a diagnosis of 'laziness' or 'immaturity' means being willing to do a lot of hard work for your kid, but it can be so gratifying to find the RIGHT answers. Best of luck to your family in moving forward from here!

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    #107061 - 07/15/11 08:46 AM Re: His doc is shocked. [Re: chris1234]
    Austin Offline
    Member

    Registered: 06/25/08
    Posts: 1840
    Loc: North Texas
    Originally Posted By: chris1234
    Justamom ---
    There is a woman at my work, her step son failed his last quarter of classes as a Sr., is in peril of loosing scholarships etc., because he has alcohol and likely depression issues -- the dad refuses to get him counseling or other treatment. The kid is just falling apart and the dad assumes he just needs to 'pull himself together'.


    BIG MISTAKE.

    A very good friend's son had a lot of issues when he got to HS. They tried a lot of things then they finally went for professional help.

    The kid was put on a low dose of meds and had some behavior modification therapy in his Soph Year. His Sr year he was class president, got straight A's, captain of the football team, ya ya da.

    A huge switch!

    If your car was missing or running bad, you'd take it in right?

    A comment I heard from the dad was that the psych said these problems tend to run in families and the same thing the kid suffers from often makes the parents not bring him in. The dad has been examining his life as a result, too.

    Like on here, examining your kids help you to behold yourself...


    Edited by Austin (07/15/11 08:48 AM)

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    #107185 - 07/17/11 05:11 PM Re: His doc is shocked. [Re: JustAMom]
    Nik Offline
    Member

    Registered: 11/02/10
    Posts: 286
    Originally Posted By: JustAMom
    We're getting closer to resolving his issues....

    After ambulatory EEG testing, it was evident that he has complex partial seizures in his frontal lobe during his sleeping and waking phase.

    He may or may not have ADHD and his neuro thought he may have had this type of activity for a while and may be a lifelong condition. His neuro was a bit surprised as he thought while he the EEG would probably report normal activity because he was already on a maintenance dosage of keppra.

    I think the next step is to manage the seizures before they start to address attention issues.


    Wow! I am so glad for you that you have something concrete to work with, but at the same time, how frightening it sounds.

    How do you recognize a complex partial seizure? My DD has experienced occasional "fainting" or "almost fainting" spells where she is able to lay down and avoid a complete black out or a fall, but I wonder if there is a connection to that and the sleep issues and the ADD symptoms. She also mentioned something strange that happens when she is in a car where the light shining through trees or roadside structures creates a strobe effect: she has to close her eyes and is afraid of pain or dire consequences if she opens them. Would I be MSBP if I asked her doctor to evaluate her for the possibility of seizures?

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    #107193 - 07/17/11 07:08 PM Re: His doc is shocked. [Re: Nik]
    aculady Offline
    Member

    Registered: 12/31/10
    Posts: 1040
    I think that you would be totally reasonable and prudent to ask about the possibility of seizures, or at least to bring up the symptoms with her doctor and ask what might be causing them - seizures, migraine, problems with blood pressure, inner ear problems,etc.

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    #107926 - 07/27/11 03:01 PM Re: His doc is shocked. [Re: Nik]
    JustAMom Offline
    Member

    Registered: 06/28/08
    Posts: 89
    Originally Posted By: Nik
    How do you recognize a complex partial seizure?


    I have been asking myself this when my son's neuro told me his findings. While chatting with other teen parents who's children were diagnosed with CPS... it seems as though a number of neuro disorders were suspected until a seizure was captured on an EEG. I've learned this can be very difficult to do. The inconsistency of symptoms also seemed to make my son's psychiatrist doubt his original diagnosis but couldn't quite put his finger on what it could be. His pdoc is very experienced and accomplished for treating adolescent ADHD so we were puzzled why his treatment would work one week and fail the next.

    Part of me is looking hindsight at all the other dianosis and doc notes from the time he was an infant. The thought of the possibility that he may have had this since infancy makes me venture into the 'What ifs" Why didn't his pediatrician, psychiatrist, school professionals, and I miss this... as it seems we all kept blaming the each other for his issues.

    His neuro says this type of seizure would often leave the person completely unaware of them. I once tutored a student who had epilepsy in reading and he would have staring spells in mid paragraph. When i brought it to his attention, he looked puzzled as if I had made them up. This would continue after he read a few sentences. I know the nurse video taped the episode so they could show his neuro and it help in changing meds/dossage.

    I'm still fustrated and sad but I know it is what it is. He will have to take medication for the next 5 years and if he doesn't have another seizure, it is considered in remission. Transportation, on the other hand, is a bit tricky figuring out when it is a good safe time for him to drive independently.

    Thanks everyone for sharing your thoughts here. It really helped me feel a bit confident in my thinking as I had many of the same ideas and it gave me a few leads as where to look.


    Edited by JustAMom (07/27/11 03:02 PM)

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    #107929 - 07/27/11 05:07 PM Re: His doc is shocked. [Re: JustAMom]
    Nik Offline
    Member

    Registered: 11/02/10
    Posts: 286
    Originally Posted By: JustAMom
    Originally Posted By: Nik
    How do you recognize a complex partial seizure?


    I have been asking myself this when my son's neuro told me his findings. While chatting with other teen parents who's children were diagnosed with CPS... it seems as though a number of neuro disorders were suspected until a seizure was captured on an EEG. I've learned this can be very difficult to do.


    It seems ambulatory eeg would be fairly easy to do and far less problematic than all sorts of medicine trials, I wonder why that isn't done more? Maybe it's expensive?


    Originally Posted By: JustAMom
    The inconsistency of symptoms also seemed to make my son's psychiatrist doubt his original diagnosis but couldn't quite put his finger on what it could be. His pdoc is very experienced and accomplished for treating adolescent ADHD so we were puzzled why his treatment would work one week and fail the next.

    Part of me is looking hindsight at all the other dianosis and doc notes from the time he was an infant. The thought of the possibility that he may have had this since infancy makes me venture into the 'What ifs" Why didn't his pediatrician, psychiatrist, school professionals, and I miss this... as it seems we all kept blaming the each other for his issues.


    I went through this too, and it's so not worth the emotional drain, we all did the best we could. I read a quote I liked today from Anne Lamont:

    "Forgiveness is giving up all hope of having had a better past."



    Originally Posted By: JustAMom
    His neuro says this type of seizure would often leave the person completely unaware of them. I once tutored a student who had epilepsy in reading and he would have staring spells in mid paragraph. When i brought it to his attention, he looked puzzled as if I had made them up. This would continue after he read a few sentences. I know the nurse video taped the episode so they could show his neuro and it help in changing meds/dossage.


    oh wow, my DD has those mid sentence staring spells but they are very brief and I only notice them when I am mid-sentence lecturing her lol, I think it's just her way of tuning out to send me a message but I'll have to keep a closer watch now.


    Originally Posted By: JustAMom
    I'm still frustrated and sad but I know it is what it is. He will have to take medication for the next 5 years and if he doesn't have another seizure, it is considered in remission. Transportation, on the other hand, is a bit tricky figuring out when it is a good safe time for him to drive independently.


    Oh, that is a dilemma. Will the meds "cure" the seizures permanently at some point? Do they understand what causes them in the first place?

    Best of luck going forward, I am happy for you and you son to finally know what is going on so you can focus on the right path going forward, I will keep you in my thoughts and prayers, thanks for sharing all of this.

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    #107961 - 07/28/11 04:45 AM Re: His doc is shocked. [Re: Nik]
    JustAMom Offline
    Member

    Registered: 06/28/08
    Posts: 89
    Originally Posted By: Nik
    oh wow, my DD has those mid sentence staring spells but they are very brief and I only notice them when I am mid-sentence lecturing her lol, I think it's just her way of tuning out to send me a message but I'll have to keep a closer watch now.


    .


    grin I usually stop talking and stare disappointedly if my boys look like they are rolling their eyes and repeat from the beginning.

    The staring spells for this guy appeared after he read a few sentences. One of the strategies we were working on are ways to go back to where you remember you last read and he would go back to the beginning of the paragraph again almost insisting he didn't read past the first word. There was a swaying movement that looked like he was going to pass out but when I asked if he felt dizzy afterwards, I would get a puzzled look and asked why I would ask him that. After my son's seizure, I read there was such a thing as reading induced seizures.

    I really enjoyed your quote from Anne Lamont. Thank you.


    Edited by JustAMom (07/28/11 04:47 AM)

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    #108040 - 07/29/11 06:22 AM Re: His doc is shocked. [Re: JustAMom]
    Nik Offline
    Member

    Registered: 11/02/10
    Posts: 286
    Hmm, I had a talk with my DD about this and she was surprised that it isn't normal, she thought it was something that happens to everyone. She said she is aware when these spells are happening and describes them as a temporary "pause" like a sudden onset of fog that lasts about 15 seconds, she usually shakes her head after it happens and apologizes which makes it seem more theatrical. I'm definitely going to mention this to her doc.

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